Living with a urea cycle disorder (UCD) doesn’t have to keep you from enjoying your life and doing the things you love if you learn how to manage it. When it comes to exercise and travel, here are some tips to help you stay active and on the go.
Did you know that some exercises and activities could cause ammonia levels to become dangerously high? Whether you’re indoors or outdoors, here are some exercise tips and advice for staying healthy while you have some fun.
Hear Mykah’s story about her UCD diagnosis and advice for others.Read transcript
My name is Mykah. I do have a rare condition called OTC deficiency. I’ve had it since I was about 8 or 9. That’s when I was diagnosed.
Before the diagnosis, um, I started, like, feeling really light-headed, and I was always having headaches that were swarming my head. And at first I was like, I thought it was like, okay, maybe this is just gonna come and then go away, but it actually didn’t.
And then I finally was like, okay, let me just tell my parents and maybe, um, see if there’s anything wrong with me. Maybe I need to be on some sort of medication.
So, um, after that, um, they brought me to a doctor and we, um, I just pretty much answered all their questions, and they ran some DNA tests to see if I had the same condition as my little sister. Come to find out that I did.
I watched her grow tremendously. But she definitely has always been, like, super strong and a, like, one of the bravest people I’ve known in my whole life.
Whenever I come home from school, I make sure that if I make myself something, I’ll always make her something, too, and that if I’m thirsty, I’m like, well, she’s probably thirsty, too. So, I’m just going to offer her something to drink because she doesn’t always ask. So, I always just like, do my best, like, to put myself in her shoes.
I remember one time I had an episode at school, which is the first and only time I’ve been hospitalized. We were playing basketball, and I didn’t want to be the kid who had to sit out while everybody else was working really hard. I wanted to keep going...At a point, I was, like, walking around, talking to people, and they were like, Mykah, are you okay?... I think you need to go to the nurse.
And I could tell that, like, I was kind of wobbly. I couldn’t really stand too much on my own. My parents came. I remember sitting there and, like, kind of, like, being woozy. So whenever I went to the hospital...I told them everything that happened. One of the main things that I told them was that I wasn’t drinking a lot of water. I did have some, but definitely not enough for the amount of running that we were doing. And my doctor told me that that wasn’t good, and that I should intake a lot of water from now on, especially with me being an athlete.
Some advice I would give to a teenager, when it comes to overprotective parents—I would say reassure them that you’re growing physically and mentally. And that you are becoming more responsible and more mature.
Also, listen to everything they have to say, and make sure you, you just get as much information about your condition and ask as many questions as possible.
Some advice that I have for parents is to stay calm and really just take a deep breath in, because at some point in their life…they would eventually have to do all this stuff on their own. Just ease into the process.
If I could give advice to my younger self, it would definitely be to continue to have hope, and just not think of the worst or all the bad outcomes or possibilities.
Just know that it’s going to be okay. Your life may be different from everybody else’s, but it’s definitely going to be, definitely going to be worth it.
Take it easy when exercising
Whether jogging through the park or playing tag on the playground, intense physical exercise causes the body to use lots of energy. Your body uses stored protein to create this energy, and using too much of that stored protein can cause ammonia levels to rise to unsafe levels.
Amy, an adult patient living with a UCD, listens to her body and her doctor so she doesn't push herself too far when exercising. “I worked with my doctor, and we came up with a light running program that doesn't cause my ammonia levels to go up,” she says.
School-aged children who can't join in gym activities or race around during recess can feel left out. One mother worked with her daughter's school and came up with an easy solution. “During those times when it's too hot to run around on the playground, she gets to pick a classmate who can play games with her indoors,” she explains. “The kids think it's cool to be picked to hang out with her.”
You can have fun with these low-intensity activities. Remember to always talk with your doctor before starting any activity.
- Table tennis
- Bike riding
Ammonia levels are different for every person living with a urea cycle disorder. It’s important to talk to your doctor before starting any activity or exercise program.
Use these tips to help make the process of traveling with a UCD as smooth as possible.
Before your trip
Be prepared in the event of an emergency
Check in with your doctor. Make sure your medical protocol letter is up to date.
Do your research. Find the metabolic center that is closest to where you’ll be traveling so you know where to go in an emergency. Consider reaching out yourself or having your doctor contact the metabolic team to let them know you’ll be in the area.
Prepare for emergencies. Make sure you have everything you would need to bring to the emergency room just in case.
Create a travel itinerary. Add things like when you need to eat or take medicine so you know where you’ll be when this happens. Don’t forget to bring snacks and extra fluids with you!
Do as much as you can ahead of time. Contact your hotel and any attractions or special locations you might be visiting. Let them know when you’ll be coming and whether you need any accommodations, like a refrigerator in your hotel room or a wheelchair rental from a museum.
If you’re traveling by plane
Pack smart! If you are checking a bag, pack all nonessential items in there. Put any items you need to access while traveling in your carry-on bag, including medicine and snacks. If you're not bringing your usual go bag, make a checklist to be sure all the items you may need are packed somewhere that is easy to reach.
The carry-on bag size limit is airline specific, but you are usually allowed a bag up to the size of a small rolling suitcase and a purse or backpack.
Carry-on luggage will be X-rayed and/or searched when you go through security. Liquids need to be in a quart-sized zip-top bag and may not exceed 3.4 oz, though exceptions are made for things like liquid medicines.
Make sure you know how to travel with medicine. Give yourself extra time to get through airport security. You can use the Transportation Security Administration (TSA) website (https:///www.tsa.gov) for information or contact your airline to ask if they have any specific tips for traveling with medicine. You may want to ask your doctor for a brief letter that explains why you need to keep your medicine with you on the plane.
Arrive early. A good rule is to arrive at the airport 2 hours before your flight. You may want to plan more time if you have to park your car in a garage, or are traveling with medicine or special food.
Check your luggage at the ticket counter, and make sure any important items that you may need when traveling (food, medicine, etc) are in your carry-on bag.
Be prepared to gate check larger carry-on bags. If you are traveling on a smaller plane, sometimes rolling suitcases or duffel bags must be “gate checked,” meaning airline staff take them from you as you are boarding the plane and stow them with the checked luggage. If this happens, make sure any essentials in your carry-on bag (like your medicine) get switched to your purse or backpack because you will not have access to them during the flight.
Prepare for security. You need your boarding pass and photo ID to show the TSA officer. When going through security, you usually need to take off your shoes and jacket and empty your pockets.
If you are traveling with medicines, be prepared to remove them from your bag and explain what they are to the TSA officer. You may also need to show the TSA officer other medical items, like any supplies needed to take your medicine. Many people also bring a copy of their prescription or a note from their doctor.
Medicines, baby formula and food, and breast milk are allowed in carry-on bags in reasonable quantities over 3.4 oz and are not required to be in your quart-sized bag of liquids. Tell the TSA officer about any larger liquids you have, as he or she may need to open these items to do additional screening.
TIP: You can’t bring beverages through security, so bring an empty reusable bottle or plan to buy water once you get through.
If you’re traveling by bus
Contact the train or bus station ahead of time to find out how far in advance you should arrive, especially if you need accommodations.
Make sure important items like food, drinks, and medicine can be accessed easily, as some companies may require you to stow larger luggage.